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Tuesday, May 15, 2018

Real Live Poetry

I have been witnessing real live poetry. I have been watching my twins during the past year, and the struggles and triumphs they have been through, and it’s pure poetry.

My boys are sophomores in high school now. About to end their sophomore year, actually- how did that happen? Just yesterday they were the size of a loaf of bread, and about as heavy. Now I watch what they are capable of as amazing young men, and I am astounded at who they have become.

One boy got up on stage a few weeks ago and belted out the most incredible solo with his choir behind him. MY boy! Say what?!? I said, he doesn’t sound like that when he’s rockin’ in the shower at the top of his lungs for 45 minutes! It brought tears to my eyes to see how confident and beautiful my boy is. He tried out for 4 choirs for next school year, and made it into all four. What?!? Amazing.

My other boy has had a longer struggle this year. First our IV treatment took its toll. Anxiety grew to the point my boy could no longer get to school. So then I had TWO boys- my sophomore and my 6th grader- who couldn’t go to school due to panic. Cri.Sis. Major crisis.

My 6th grader got into a therapeutic day school about an hour south of our home. It’s been slow, but we’re making tiny progress. My sophomore got into a partial hospitalization program (PHP) an hour east of our home. Guess who has spent the past couple months DRIIIIIVVVVIIIINNNNGGG???

And yes, the middle school district will provide transportation. However, my 6th grader tried the taxi twice, and almost got into a car accident on his second trial, so now he has vowed to never get into a taxi alone again. Gr.

My sophomore spent four weeks in the PHP. Every day, practicing his exposure therapy to desensitize his brain and help him learn coping skills to deal with panic. He worked so hard. He did his homework. He faced his biggest fears every day. It was evident that he desperately wanted to get better.

Yesterday, my sophomore “stepped down” from the PHP to the Intensive Outpatient Program (IOP). It’s a half day program, so my boy can go to school for half days also. Yesterday he took a taxi from his IOP to his school, and walked through the doors for class for the first time in several months. This boy. Pure poetry. I think about how far he has come, how many obstacles he has faced in his 15 years, all with grace, dignity, and courage.

I’m in awe of my children.

When I look at my twins, I still see the little 2 lb micro-preemies they were almost 16 years ago. And I wonder how a human so tiny can survive, let alone thrive. It takes guts to make it in life, especially when you’re a kiddo who has a lot of stuff stacked against you. My babies have more courage than anyone I’ve ever met.

In two weeks my boys start Driver’s Ed. Over the past few months, I didn’t know where we would be at by the end of May. I didn’t know if anxiety would take an even worse turn and we’d be somewhere even scarier. I didn’t know if things would be back to normal. I didn’t know if the boys would be able to take Driver’s Ed when I signed them up a couple months ago, but I decided to take a leap of faith and assume things would be better by the end of this month. It was sort of my mantra. By the end of May, things will be better. By the end of May, things will be better.

And things are better. I am wary of crises, because they sneak up on you and wipe your feet out from under you without you even having a suspicion they’re behind you, and it can happen at any time. But in this one moment, right now, things are better. And I am grateful for how far my boys have come these past couple months.

Watching my boys find their path through life is like watching real live poetry: unexpected, moving, complicated, beautiful beyond description.

Tuesday, April 17, 2018

Finding Hope Through The Hard Stuff

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I'm not one to complain, but I have to be honestsometimes I feel a little resentful about being a special needs parent. Throughout the years, I have had to learn so many new things in order to successfully parent my four sweet children who have special needs. Sometimes I’m tired of having to learn new things. It’s not that I don’t like to learn, it’s the kind of things I have to learn. Sometimes these things are not fun. I wish for my kids that they could have peace and health and ease. But often, the things our family goes through are difficult, and it's hard to watch my babies struggle.

When my kids were little, I loaded them in the van after school every day for therapies of all kinds, while my friends loaded their kids into their vans for soccer, baseball, basketball. I learned all kinds of tools while sitting in on therapy sessions. I learned about sensory diets, brushing, stretches for hip flexors that are too tight, how to deal with a child’s anxiety and not feed into it, how to build strength in cheek muscles so words can be pronounced correctly. I've had to learn how to navigate IEP's, how to hire lawyers and educational advocates, where to get the best neuropsychological exams. I've researched what types of holistic interventions will help with anxiety, ADHD, Tourette Syndrome. When I started making weighted blankets, I realized that some families have never heard of such a thing! I wished I had never had to search for ways to calm my children down, or help them sleep or focus.  

Sometimes I wish I didn’t know everything this journey has taught me. Because sometimes this journey is hard. 

In the past couple months, I’ve had a crash course in all kinds of new things. I’ve had to learn about what to do when one of my boys refused to go to school because of extreme anxiety. I’ve had to learn new ways to work with the system to get my son what he needs, which is out of the realm of “normal.” I’ve had to learn about therapeutic day schools. I’ve had to dig into anxiety even further and figure out how to help my boy adapt to a new environment. Even though the new school is a perfect fit for my son, it’s new. He doesn’t do ‘new’ well, so it’s been a journey. It feel like two steps forward, one step back, every day. But I comfort myself with the tiny little baby steps forward, because at least we’re making progress. 

Just when I think there can’t possibly be anything else drastically, devastatingly hard and new to learn, life comes up with new surprises.  

Just when I think I should be able to take a breath and be done learning about hard things, something new pops up. More anxiety, in a different kid, showing up in a different way. I’ve had to figure out what kind of documentation a school needs in order to have a child medically excused because his PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders associated with strep) is causing so much anxiety he can’t even function. Just when I’ve got one kid situated in his new therapeutic school, and I think we’ll get a break from crises, I’ve had to put my Advocating Pants right back on and go to work solving the problems of another kiddo.  

Last fall, my 15 year old twins did a 5-week course of IV treatments for their Lyme, Chronic Inflammatory Response Syndrome (CIRS, also known as mold toxicity) and PANDAS, called ozone therapy. One of my boys sailed through the treatment and has done amazing since finishing the protocol. Anxiety is reduced, there’s no more sensory overwhelm, his tics have gone. My other boy is a different story. I thought for certain that I’ve royally screwed him up by having him do the treatment, because he’s feeling SO much worse than before the treatment. It’s got to be my fault that he is suffering, living in a tortured, anxious body. I made him do the treatment and now he’s worse, while his twin brother is doing amazing after the very same treatment. As parents to special kids, how many times do we second guess ourselves? How many times do we wonder if our decisions are the right ones?

My boys did blood tests before and after the IV treatments. The results shocked me. The labs showed that the IV treatment has healed both of my sons from some very major infections that they could not get rid of no matter what treatment we tried prior to the ozone. I was dumbfounded and elated. And confused. How could the labs be so great, and my one boy be feeling so terrible? The doctor said our boy still has some infections that need to be treated. He has some things that need to be addressed, some inflammation that needs to be dealt with. And then maybe he will find the elusive healing we so desperately search for.  

But, at least I know that ozone was the right choice. On paper, my son is healing. Now we just have to get his body to a place where he feels like he is healing. I’m grateful that I can pack up my guilt about the ozone and ship it off. That treatment was the right decision. 

My boy with the anxiety started having panic attacks every day. On the bus to school. At school. At church. Anytime he was away from home. We were in crisis mode again. When we heard about partial hospitalization programs, and it was recommended that our boy attend one, I thought, “How can there be anything left in the world for a special needs kid that I don’t know about? How have I never heard of this before?” But sure enough, this was something new I needed to learn about.  

Frankly, I didn’t want to. I’m raw. I’m worn out from all the learning of all the things I don’t want to have to know. I don’t want to know about therapies and meds and special schools and special diets. I don’t want to know about all the kinds of supplements that might help anxiety. I don’t want to know about special programs for kids who can’t live life because of too much anxiety. Enough. I want someone else to do this hard stuff for me. Usually I can get through our tough spots pretty gracefully, but there are times when the days seem long, dark and lonely. On those days, I sometimes wonder-- when can I be done learning the hard stuff?

Our boy was number one on the waiting list at a top notch partial hospitalization program. We waited for three weeks for the call that would admit him. We finally got The Call, and our boy will start the program for teens with anxiety and OCD this week. He will go to this outpatient program every day for a few weeks. They will help us tweak meds, keep up with school, and learn new coping skills. I know this is what my boy needs.  

While driving my younger son the hour to his therapeutic school (because he’s too anxious to take a special school-appointed cab) I’ve had a lot of time to sit with my exhaustion and grief. I whined to myself, when will it be my turn to just have a “normal” week? I know, I know, there’s no such thing as normal. But in my funk, I fussed that my life certainly can’t be normal. 

Last week I confronted a fork in my road. I realized I could let this crazy season of life drown me and I could fall apart, or I can find a way to take care of myself and start swimmingI threw a ton of resources and self care at my worn out body and soul. A friend told me, once again, that these beautiful children were given to me for a reason. I was chosen for them. I’m not sure I’m qualified for this task I was “chosen” for, but I pulled my Advocating Pants right on up again and decided that I’ll meet the challenge as best I can, like I always do after a period of grief and exhaustion.  

Sometimes I wonder why I have to keep learning about all these things that make life so hard. I ask, “Why me?”  

Then I remember the time when I was running a support group for families whose children had Sensory Processing Disorder. Once, I met with a family who had just found out their little girl had SPD. They were scared and worried and overwhelmed. Going into the meeting, I was concerned that I wouldn’t know how to help the parents. Who was I to know how to help them?  

When I sat down with the family and they began asking questions, I had an answer for every single one. I had ideas they could try. I had advice to give. I had experiences to share. I surprised myself. I didn’t know how much I knew.  

You never know how much you know until someone needs to know what you know. Then you try to help them by brainstorming about all the things you’ve done with your own kiddos, and you realize what a wealth of knowledge you’ve accumulated. So in some ways, it is a gift to keep learning, even when the learning is hard. 

I think this is why my life path keeps me learning new things about the special needs world: so I can share what I know with other families and help them find hope. Otherwise, what’s the point? While I’m struggling through the quicksand of trying to find answers to our latest crisis, I don’t realize how much I’m learning. Once we’re through the crisis and I find myself in a position where someone asks a question about how to help their own child, I often find I have been in their shoes and can empathize. I often have some experience to share. If nothing else, I can be a safe place for others to vent, question, lament, grieve…and maybe I can help them find hope.  

Although I struggle with our family’s challenges and crises, when we’re back on solid ground I am invariably grateful for the journey we’ve taken, because it leads me to be able to help others. 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!  
Want to join in on next month's Voices of Special Needs Hop? Click here! 

Thursday, April 12, 2018

Soft Spots

A few weeks ago, I went back to church. I haven’t been there for a while, because of a lot of things. Kids, craft shows, exhaustion…lots of things. Our kids are very involved in our church community, which I love, so I decided I need to step up and show up again.

The second I walked into our lovely, joyful, wonderful church, I second guessed my decision. As a friend wrapped me in a bear hug, I remembered the real reason I haven’t been to church very much recently.

My church makes me cry.

Our church is “contemporary.” Which means we have a rock band to lead our anthems and our pastor wears jeans and has a message that welcomes everyone in any walk of life. I love it. Everything about our church gives me the feels.

But when I get a case of the feels, I feel weak and vulnerable. I feel like there’s a chink in my armor and the fa├žade that I have carefully put together in order to carry on under unimaginable stress begins to crumple. It feels uncomfortable. From the songs we sing, to the hugs friends give, to the message the pastor speaks about hope and unconditional love— it all makes me feel. Which makes me feel like sobbing big, ugly sobs through the whole service.

I was chatting with my parents after this particular Sunday when I went back to church. I told them how I feel like crying every time I go. My dad, who is a pastor, said that’s because church is a soft spot, and my life is hard. So when I find a soft spot, it makes me a little weepy.

A lot of things make me cry when our family is in crisis mode. I try my best to stay away from those things that crack my hard candy shell and reveal my raw vulnerability. I try to stay away from them because I worry that once I crack and start letting out the feelings, they’ll overtake me and I’ll never recover, never stop crying. It’s better, easier, to just stay strong and carry on.

I had been able to have a part time job that I absolutely loved during the past couple months. But then the pieces of my life began to unravel as not one, but two, children fell into crisis. I had to scramble to pull out our resources, to figure out how to help my kids, to get their needs met. I had to figure out what schools needed for documentation to excuse my boy from school because he is in a PANDAS flare and anxiety is through the roof, making it difficult for him to function. I had a crash course in therapeutic day schools and partial hospitalization programs for teens who have anxiety and OCD. I hit the ground running and am doing the best I can to meet everyone’s needs.

In the midst of all this chaos, my coworkers were incredible. They understood me and empathized with me. One day, I drove my son to his therapeutic school- an hour away. He had a very tough morning because of anxiety and it was extremely difficult to get him to stay at his school. I finally got him situated, and drove the hour back home to work until it was time to pick my boy up again.

I cried most of that hour-long ride home. This is hard, people! This whole parenting, grieving, figuring out how to help your kids thing is the hardest thing I’ve ever had to do! To watch your babies suffer is torture.

I pulled myself together and leaned my head out the window into the cold wind as I drove the last few minutes to work, so my eyes would look somewhat normal again. When I got to work, my three supervisors were in the front office. One pulled me aside and gave me a gift bag. She said, “I want you to know I care about you.” I said, “Listen, don’t make me cry again. I just got done weeping for an hour.” I pulled out a beautiful gift, and read the tiny card attached to it. I burst into tears. My sweet friend said, “Maybe you should read the big card when you get home.” I laughed through my tears and gave her a hug. And then went into the bathroom to pull myself together, again.

I came out of the bathroom and tried to hold in my tears as I popped in the front office to apologize once more for being late. My friends all said they understood, not to worry. One supervisor said, “We have such a soft spot for you, Carrie.” They went on to say thoughtful, beautiful, kind things. To which I responded by completely breaking down again. I sobbed, “I already told all of you, you’re not supposed to be so nice to me because then I cry!!”

Then a coworker from the classroom I worked in stuck her head in the office. She saw me crying and enveloped me in her nurturing, supportive arms. I cried more. I went into my classroom and my other two coworkers were equally as kind to me, so I cried some more. I told them it’s so hard for me to hold it together when I’m confronted with pockets of kindness and empathy. They said it’s ok to cry, you can’t hold it in all the time.

I felt like explaining that if I start crying, I’ll just keep crying. And I could cry all day every day, at this point. Because our family is facing some scary, intimidating, dark stuff.

I’ve realized that whenever I hit a soft spot in my life, a place where I don’t have to keep my armor up, it’s uncomfortable because I feel vulnerable and so emotional. I guess we need soft spots once in a while, to let out our feels, to let out the stress. But when I find myself in a soft spot, I feel so emotional that I’m worried I’ll never recover, never be able to stop crying.

I’m a work in progress. I’m trying to find a balance between being strong and letting in softness. I’m not good at navigating the soft spots, but I’m so grateful for the bits of beauty and grace in my life that show me what it means to be soft.

I’ll keep practicing.

Tuesday, March 13, 2018

Therapeutic School

Here’s what happens when you persevere, keep searching, keep pushing: You find the right place. You find the right people. You find answers. Sometimes it takes YEARS, but you do find answers when you don’t give up.

You know what else? There is a place for everyone in this world. It doesn’t matter if you have a disability or not, there is a place for every person to fit in, feel happy and comfortable, learn, and grow. Sometimes it takes years to find that fit, but when you do, it’s magic.

I’m hoping we’ve found that for our boy. We started touring therapeutic day schools last week. My boy and I toured two schools, and we have a third one in the upcoming weeks. What I realized when I was thrown into this new experience is that there wouldn’t be a wrong decision. No matter which therapeutic school we picked for our boy, the people there would understand him in a way no one else has, ever. It was just a matter of picking the school that he felt the best in.

During the second school tour, I saw my boy blossom. He asked thoughtful, smart questions. He talked with the director. He lit up when he heard about all the services this school has to help kids like him feel safe, calm and comfortable. He even let a little of his goofy side show.

My boy asked the director if they had a discipline system like at his old school. She said no, they don’t have anything like that. I told my son that he had frequently felt like he was in trouble at his old school because his brain works differently than most kids. For many kids, it’s easy for them to concentrate, learn, follow directions. I said that this school was made just for kids like him, and he won’t get in trouble here for the way his brain works or for having anxiety.

It sort of felt too good to be true. My boy turned to me and, in front of the director, exclaimed, “This is my favorite school so far!” I grinned and said, mine too.

The schools we toured have figured out that in order to engage kids with extreme anxiety, they need to make the school experience as enjoyable as possible. The little things make the biggest impact. For instance, at the school we picked, they have a “taco swing.” My boy loves a good taco swing, that squeezes you as you rock gently. My boy has access to this swing any time he needs it. The director keeps EVERY color of Theraputty in her desk. Every color. For my boy, putty = Heaven. The school has a microwave. My boy can bring soup for lunch and warm it up. At his old school, he rarely ate anything for lunch because he has trouble finding food that appeals to him. Hot lunch didn’t work, cold lunch from home didn’t sound good. Something as simple as having access to a microwave makes a huge difference in a boy’s day.

The school is very small- 26 kids in grades 6 through 12. There are no bells to announce the end of a period. There are no crowds. Most of the students work from home, virtually, on their computers. My boy will have that opportunity also. If he feels too anxious to come to school, he can do his lessons virtually. Our hope is that he can get his body in the school building as many days as possible, because he is a social guy and needs people.

The school has every kind of wiggly chair you can imagine. They have stand up desks. They take movement breaks as needed. They have a point system so my boy can earn treats. They do field trips. They are fun and warm and nurturing, just what my boy needs. My boy needs a little extra TLC, a little warm and fuzzy in his life, and this school does that.

Today was my boy’s first full day of school. He has modified hours because getting up early causes anxiety. So we drove the 45 minutes to get my boy to school by 9:30. He had extreme anxiety, even though yesterday when we came for an hour to sign papers and get his Chromebook, he felt calm and positive. Today he didn’t want to leave the house. He didn’t want to get out of the car at school. He didn’t want to go in the building. He didn’t want to talk to the teachers. He shut down and whimpered repeatedly that he wanted to go home.

But then, the director brought out the Theraputty. She brought one color, and challenged my boy to get it out of the tub, because it’s very stiff. Bam, he was engaged. His smile broke through the clouds of anxiety. He pulled that putty and laughed with the team about how hard it was to get it out of the tub. He asked if he could see the next two colors of putty that are even more stiff, so the director fetched the tubs for my boy. I had stayed for about 20 minutes by that point, and could see that my boy was warming up. So I leaned over, told him I was going to run errands for a little while, then I’d come back and pick him up. He pretty much ignored me, smiled, and kept laughing about the putty.

Bam. They got him.

I remember the IEP meeting last year when we wrote into the plan that my boy should have access to a stand up desk, because when he can move he concentrates better. It wasn’t a big deal, and the teachers were fully on board with that, but they had to think about how that would look in their classroom. They had to do something new to fit my boy’s needs. It’s amazing to know that he is now in a place where he IS the “normal.” Every kid in this school has access to whatever they need. Theraputty? Done. Time with the school pet (an adorable gecko)? Done. Stand up desks? Wiggly chairs? Taco swings? Done. Photography class? They’ll make that work. Art lover? Three different kinds of artsy materials were immediately placed in front of my boy this morning when he was feeling The Worries.

My boy’s teacher just texted me that everything is going well. My boy completed one assignment, helped set up for PE, and is doing well.

What?!? On so many levels— what?!? So first of all, the teacher TEXTED me! She knew I would feel anxiety myself about today, and she put my worries to rest. And second, I am so happy that my boy is doing ok. He is making it work today. He’s conquering his fears about a totally new setting. I’m so proud of him.

My dream has been to find each of my kids a place where they fit. Usually this seems like a task with no end, like I’ll never get it figured out for them. Like I can’t help them get rid of their anxiety and chronic illnesses. Like I don’t know what path to take, like we’ve tried everything, like I don’t know what else to do to help them.

But I think I’ve found the place that will help at least one of my kids. I think I’ve found an answer for at least one of them. It’s not going to be perfect. It’s still messy, stressful. We have a long path ahead of us, and I’m certain there will be bumps. But to know that schools exist that perfectly fit my sweet boy, that is a beautiful realization.

Last week, one of my boy’s friends texted him and asked why he isn’t at school. My boy didn’t know how to respond. So this week, when we knew what new school my boy would be going to, I sat down with my boy and we wrote a letter to his friends. We told them that my boy can’t go to his old school because it is just a little too overwhelming, but that we’re still in the same house and he still wants to be friends, hang out on weekends, get together for birthdays. As we put the letters in the mailbox, and as I drove to our old school to turn in my boy’s iPad and retrieve his Epi Pens, my heart felt heavy. There have been so many emotions with all this. It has been so hard. Sometimes I wish life was as easy for our family as it looks for so many others. I wish I could take for granted every morning when my kids run to the bus stop. I wish that was just normal. I wish I didn’t feel envious of all the Mama’s who toss a, “Have a great day!” Over their shoulders as the front door slams and their child makes his way out to the world without a struggle.

The past month and a half has seemed like a dark, lonely tunnel that we’ll never see the end of. It has been a rotten, miserable, torturous time. After seeing a glimpse of light at the end of that long darkness, I’m almost afraid to hope that the light might stay. So many many times, I think we’re at the end of a darkness only to be suffocated by it, blindsided by it, again. But I’m either resilient or just stupid, because I continue to hang on to hope. I am choosing to trust this light, this new school, and hope that it helps my boy. I try to focus on the fact that my children are unique and need special things, and now I’ve found a special place for my body that fits his needs.

If you struggle long enough, search hard enough, it is possible to find what you’re looking for. Never give up. There is light at the end of the darkness. My boy is proof of that.